Tuesday, February 28, 2006

Open Access to Medical Literature

In brief, there are a number of reasons why open access to the medical literature is important for the public. Although most of us will not wish to read the research literature for every acute or minor illness or emergency, some of us will be motivated to learn more when dealing with chronic and serious illnesses, particularly ones that are difficult to treat. At first, not everyone will understand the medical literature; however, it is our right to try to do so. This is part of our fundamental rights to freedom to read. And, given the option, some people will learn how to understand medical research. Back in our history when only the clergy had access to reading material, few people learned how to read. Readily accessible reading material was necessary for public literacy and education. Even without glancing at a single article, however, the public benefits greatly from open access to the medical literature, because it means more knowledge in the hands of those who serve us: medical professionals, educators of medical professionals, politicians and public servants, and journalists.

Details:

One of the reasons for open access to the medical literature is to allow people to actively participate in understanding and assessing the treatment options for treatments they themselves, or their families, suffer from.

One of the issues Ray brings up:...could justifiably claim that most lay people are insufficiently well trained to understand even the language of medics or the reliability of the sources, especially on the Internet...

Several points here:1. People are using the Internet anyways. Open access to quality information just means the odds are a great deal better that they will find accurate information.2. One of our most essential of freedoms is intellectual freedom, and the freedom to choose what we read is an important element of intellectual freedom. This applies not only to what we choose to read; it applies to the level, too. If I choose to read material I do not understand, that is my choice. There are people who have started learning about medical research, and did not understand the articles at first, but found they needed to do some reading in medical textbooks in order to understand. Sharon Terry, an open access advocate who learned about a rare medical condition in order to help her children, went from looking at information she did not understand, to reading medical textbooks, to eventually becoming a co-researcher and helping to write the medical research articles - helping her own children along the way.3. There was a point in our history when reading itself was considered beyond the ability of the public, something best left to the clergy who would interpret and present the public with the information they thought the public should have. Until people were able to access reading material, they did not learn how to read. Until recently, members of the public did not have ready access to the research literature. When Medline first became public in the 90's, I understand that usage increased 100 fold (that is, one hundred uses where before there would have been one), astounding the NIH which produces Medline, as the usage exceeded the population of physicians, who were presumed to be the only likely readers for this indexing service.

Ray makes the point that we are probably not going to review the medical literature in the event of an emergency. Generally speaking, I would concur, and would add for any acute illness, whether emergency or not. However, there are times when I can see a family or patient dealing with an emergency and less than optimum medical staff availability helping out by reviewing the medical literature.

We are much more likely to read the medical literature if we or a family member has a chronic illness, as Ray points out. To me, this seems particularly likely when the illness is not easy to diagnose or treat, there is ongoing research and hope for a potentially better treatment outcome, and/or the illness is genetic in origin, and thus likely to afflict more than one family member.

Another point I would suggest adding:

The public benefits from open access to the medical literature, even if they do not read it themselves at all!

Open access to the medical literature means more access not only for patients and families, resulting in direct benefits, but it also means more access for other groups as well, which also benefits the public.

Examples:

The medical professionals - doctors, nurses, and allied health care professionals - who serve us have better tools to help us with open access. With open access, the rural doctor or the urban physician working from a private practice office has the same access as the physician working in the research/teaching hospital. Even in an emergency or in a situation where the patient prefers not to read the research literature, the patient still benefits because those who care for us have the best possible access to knowledge.

Educators have more access to the medical literature. It is easier to set up programs to teach medical professionals, and teach them well. We all rely on these professionals at different points in our lives; having enough skilled professionals makes a huge difference in our ability to receive the care we need.

Politicians and public servants: our policy-makers have more knowledge on which to base sound decisions.

Journalists have more access with open access. This makes it possible for them to interpret the research for those who prefer not to read it directly. Journalists can help us with health matters by alerting us to possibilities for prevention, early diagnosis allowing for early treatment, and new research which brings up the potential for a new treatment.

2 comments:

Heather,Many thanks for the thoughtful comments on the rough draft introduction to my first chapter. It's interesting that you should raise the historical context and Sharon Terry's story. The prologue to my book tells the story of Colmcille and the Battle of the Book in 1461 and one of the central themes (which I didn't include in the blog post) is that lay people and professionals can improve decision making processes by working more effectively together. Thanks again for the comments.Regards,Ray

Heather,Many thanks for the thoughtful comments on the rough draft introduction to my first chapter. It's interesting that you should raise the historical context and Sharon Terry's story. The prologue to my book tells the story of Colmcille and the Battle of the Book in 1461 and one of the central themes (which I didn't include in the blog post) is that lay people and professionals can improve decision making processes by working more effectively together. Thanks again for the comments.Regards,Ray